It all started with a recruitment flyer for an HIV cure clinical trial. Calling for volunteers, the flyer said, “You may be eligible if you are HIV-1 infected.”
The flyer had been posted in the lobby of the National Institutes of Health (NIH) headquarters in Bethesda, Maryland. It was seen by HIV activists attending a meeting of the community advisory board (CAB) of the Martin Delaney Collaboratories, an interdisciplinary group of advocates and medical researchers who work on developing HIV cure strategies. This was after a number of NIH presentations during the meeting that had included similar language.
As a result, a coalition of HIV activists and about 60 organizations sent a letter to the National Institute of Allergy and Infectious Diseases (NIAID), calling on the agency to require the use of non-stigmatizing language in HIV research.
The letter asks for changes in HIV-related language policy to be established across the agency, removing stigmatizing and dehumanizing terms such as HIV-infected, populations and subjects when referring to people living with HIV.
The letter states that stigmatizing HIV language generally takes three forms:
- marking or labeling someone as “other”
- assigning responsibility or blame
- invoking danger or peril
Acknowledging that the use of such language is not intentional, the letter continued, “Many people do not realize many terms are offensive and stigmatizing to people with HIV and affected communities and use old terms out of habit.”
Activists have for years promoted the use of people-first (or person-first) language, which prioritizes the individual over their condition. It’s why saying someone “is HIV-positive” is generally no longer considered acceptable; instead, it is preferable to say a person “is living with HIV.” Similarly, rather than calling someone “a diabetic,” people-first language would identify them as “a person with diabetes.”
Yet, the NIH website includes a style guide to person-first and destigmatizing language; NIAID has its own HIV Language Guide, produced in July 2020.
“It just didn’t seem like the NIH was familiar with its own language guide around HIV,” said Michael W. Louella, manager of the Office of Community Engagement at the University of Washington/Fred Hutch Center for AIDS Research. “Hearing the language was sort of triggering, combined with the sudden appearance of this flyer in the lobby.”
Louella added, “It’s not so much about being right or wrong, it’s about becoming better communicators. I think it’s language that separates us, and it’s language that can also unite us.”
Another Martin Delaney Collaboratory CAB member, Jeff Taylor from the HIV+Aging Research Project-Palm Springs (HARP-PS), acknowledged that clinical wording is “ingrained” in researchers’ heads. “It’s been used in research over many years; they see it in the [medical journals] all the time,” he said. “Even though they know that people don’t like it, it’s really hard to break those habits. So, we thought it was important to go to [NIAID] and say, Remove this language, let people know that it cannot be used.”
If NIAID adopts such a policy, it would apply to researchers’ grant applications, study papers and presentations.
Another term the activists take exception to is sterilizing cure, referring to a therapy that would eradicate the virus or lead to viral clearance—terms that are not as triggering while remaining medically accurate, said Louella.
Controlling how scientists talk to each other is not the goal, Louella, who uses the pronouns they and them, added. “We are talking about when you were talking to a broader audience, where there is a likely chance that there are more than just scientists in the room. I also think it’s a good practice for scientists anyway, even if there are no other people in the room, because it’s hard to code switch,” shifting from impersonal vocabulary to person-first language.
“It doesn’t hurt for someone to learn how to speak about HIV without needing to use HIV-infected or to use certain terms that people find triggering,” they said. “It would be nice to see researchers take this idea on and for them to work among themselves, reminding each other, so it’s not just put on the shoulders of community members who have always had to fight for dignity.”
Among the organizations adding their names to the letter are AIDS United, BABES Network, SAGE, The Well Project and The Center for HIV Law and Policy).
As one of the 27 agencies within the NIH, NIAID conducts and provides federal funding for research on infectious diseases, including HIV. The proposal would apply to all NIAID-published documents, including grant applications, materials for clinical trials and NIAID-funded research papers.
To download the NIAID HIV Language Guide, go to bit.ly/niad-hiv-language-guide. Go to bit.ly/nih-person-first-style-guide for the NIH’s style guide to person-first and destigmatizing language.